Created: 12 March 2018

Currently there is no cure for NF. NF can be mild; NF can be deadly. And you just found out that your child has it. And there is a good chance that even your doctor doesn’t know much about NF.

Wow! Suddenly you are devastated, confused, and terrified all at the same time. As with any traumatic news, most of us go through at least some of the commonly accepted stages of grief - denial, anger, bargaining, depression, and acceptance. As parents of a child with any life altering disorder the stages may be just a bit different. You can’t really deny your child is suffering. You sure can be, and are, angry that your child is suffering. Anger may very well be the most common and long-lasting stage for parents. Angry that most doctors don’t know much about NF. Angry that despite NF being more common than Cystic Fibrosis nobody has heard of it. Angry that the list of possible complications is long and varied.

Despite the anger, there is hope. Hope that your child has a mild case. Hope that your child is not the one bullied or ridiculed due to some of the physical manifestations of NF. Hope that there is someone or someplace that you and your child can find acceptance and support and understanding. Hope that your child will not be one who’s life is cut short by NF.

NF First hopes to provide a community of understanding, hope, compassion, and a quest for a cure for those affected by NF.